'You look well' - invisible illness - how to respond when you feel ghastly?

Brighton_belle

LIR I didn't suggest it was the fault or responsibility of the person saying it - I was merely trying to explain to people why the person who is ill may feel upset by it.
I too said I said 'thank you very much' and always wanted it to be a pleasure for someone to have bumped into me.
But helping others grow in understanding of those with long term illness can only be a good thing in my books.

Brighton_belle

Lily-Rose wrote: »

"Oh that is kind of you...I don't feel so great, and I have good days and bad, but thank you anyway."

I like this.

Lily-Rose_3

Brighton_belle wrote: »

I like this.

That is what I say sometimes, (I don't feel great, but thank you anyway; ) if I don't feel brilliant. (I have a chronic illness, and am OK some days with average pain, and in pain a LOT on other days.)

The thing is, sometimes people say it when I look like shoite! :rotfl:

As someone said earlier, I think people say it out of habit, like at Asda, the checkout person ALWAYS says - automatically - 'sorry to keep you waiting,' when I just got to the checkout.

Some people run on auto-pilot I think.

They don't mean anything by it I am sure. :j

Sending you internet hugs (((HUGS)))

Better_Days

Brighton_belle wrote: »

I know it's really hard for those of you reading this, who haven't been through something like this to understand what could possibly be upsetting about being told how well you look. On the face of it does seem silly. But perhaps hearing some of us say it can (note 'can') be very painful, will help you be an even better friend to those in your life with long term 'invisible' illnesses.

I've been through this and I'm trying to find a way to explain - it's not that you think the person telling you it is actually saying 'you're not really ill', it's more like it's a bucket of cold water in the phrases total lack of empathy over how ill you do and have felt for a long time and how it is wrecking your life.
If you met some one you knew who actually told you they were dying and had 2 months to live, and you told the how well they were looking (because they did look well still at that point) then it wouldn't be unreasonable to suggest that that response lacked any empathy to the situation...and it's a bit like that, though I am not suggesting actually dying is on a par, but trying to give an example of when telling someone how well they look, even if they do, could be 'upsetting'.


I definitely learnt to just say 'thank you very much' though - it's not worth the stress. And I didn't want people to ever avoid me but to have enjoyed bumping into me. People say it because they lack the imagination to know what else to say, and they ultimately mean it kindly, even if it can leave you feeling very alone and in despair.
There were times when I definitely would have preferred to look as ill as I felt - it was not always a comfort to look full of health because it fuelled the guilt over being ill and the fear of being a fraud that invisible illness can bring.
2 decades on and I'm better, but I know what to say to someone who is long term ill, and I never tell them how well they look - I'll tell them they look fab in their gorgeous dress , or how much I enjoyed bumping into them or I know I'm only seeing them on a good day and how much it took to get out for a few hours.
Or I'll say, "you look really well but I appreciate that does not reflect how you actually feel for so much of the time". That final one covers everything - gives the boost people want to give to tell someone they look good, but shows empathy that you understand the fuller picture. Everyone's a winner.

Thank you so much Brighton belle, you explained the point I was trying to make much better than I did

Love your examples of what can be said to people with chronic illness - your insight comes from understanding having been through it yourself. So pleased for you that you have come through the other side. :):)

As both you and hazyjo point out, people do not always know what to say for the best so fall back on platitudes. BTW love the 'healthy' comment from your BF hazyjo

LIR I'm not sure we have fully understood each other. This thread isn't about blaming the person who makes the comment that I look well, it's about how I deal with being told I look well when I feel dreadful without putting down the other person. Sorry if I was waffly rather than clear. Anyway consensus seems to be to smile and say thanks

Lily Rose's suggestion of

Oh that is kind of you...I don't feel so great, and I have good days and bad, but thank you anyway."

is lovely as it has integrity and kindness wrapped up in a short sentence. Thank you.

lostinrates

Brighton_belle wrote: »

LIR I didn't suggest it was the fault or responsibility of the person saying it - I was merely trying to explain to people why the person who is ill may feel upset by it.
I too said I said 'thank you very much' and always wanted it to be a pleasure for someone to have bumped into me.
But helping others grow in understanding of those with long term illness can only be a good thing in my books.

I don't think it does help people gain understanding often. I think it pushes them away more often than not and is seen as a rebuttal

lostinrates

Better_Days wrote: »

LIR I'm not sure we have fully understood each other. This thread isn't about blaming the person who makes the comment that I look well, it's about how I deal with being told I look well when I feel dreadful without putting down the other person. Sorry if I was waffly rather than clear. Anyway consensus seems to be to smile and say thanks

Lily Rose's suggestion of
is lovely as it has integrity and kindness wrapped up in a short sentence. Thank you.

I think understandably, you are focused on how YOU are feeling about these exchanges. I really DO understand that! more than it might appear from my responses. HOwever, i feel a rebuttal or 'putting right' response risks not considering how the other person feels.

The thing about Invisible things is you don't know they are there. The person offering you the nice gesture themselves might be feeling rough and the ' gentle correcting' might leave them feeling over sensitive if they too are emotionally over sensitive for some reason.

Its not possible for us, or those we interact with to be perfect. I like lily roses Idea too. Though for me , a thanks is it, because it just don't discuss my health where possible.

Torry_Quine

I get that and it can be hard when you feel awful. I tend to say something along the lines of 'I'm glad I don't look how I feel' or ' This is one of my good days'

borkid

lostinrates wrote: »

The thing about Invisible things is you don't know they are there. The person offering you the nice gesture themselves might be feeling rough and the ' gentle correcting' might leave them feeling over sensitive if they too are emotionally over sensitive for some reason.

Sorry I'm sure you didn't mean it to come out this way but feeling rough is no way comparable to how one feels with ME ( I only mention ME because I have direct knowledge of it and I am sure there are lots of other illnesses where this will apply). I used to get so annoyed with people ( not literally) who said 'oh I get tired as well' when I mentioned my daughter had ME. I even had an ex nurse say similar and actually said 'if we had the same benefits system as the USA then there would be fewer cases of ME in UK':eek:

Brighton_belle

lostinrates wrote: »

I don't think it does help people gain understanding often. I think it pushes them away more often than not and is seen as a rebuttal

My suggestion of helping other people understand long term illness a little more was in reference to the discussion here on this thread. In terms of bumping into other people in real life, yes I agree you never know what the other person is going through in their life.
It can be hard to never discuss your health with people you bump into if you have no job (and never had a career), no partner, no children or obvious hobbies or your own home: there is a great pressure to explain your life a little just as a normal part of social interaction. I found it became much easier once I was able to work part time again, because I never had to explain it was part time, I could just talk like a normal person. Huge relief

Brighton_belle

borkid wrote: »

Sorry I'm sure you didn't mean it to come out this way but feeling rough is no way comparable to how one feels with ME ( I only mention ME because I have direct knowledge of it and I am sure there are lots of other illnesses where this will apply). I used to get so annoyed with people ( not literally) who said 'oh I get tired as well' when I mentioned my daughter had ME. I even had an ex nurse say similar and actually said 'if we had the same benefits system as the USA then there would be fewer cases of ME in UK':eek:

Well, I think 'feeling rough' covers all sorts of wretched illnesses and life situations - and LIR knows plenty about feeling very poorly indeed.